Please help

[HelenR23]

Ive posted in the past regarding my thyroid tests which have been up and down. I'm on 100 levo due to RAI 20yrs ago.

I have had severe anxiety due to a gastritis flare up. I've lost 2 stone in 4months and medicated via SSRIs and Diazepam but I'm getting worse by the day.

My last thyroid test was not done properly by GP even though I requested T4 and T3 to be done but only did TSH and T4. I'm now waiting results from medichecks. This is the 4th test I've done and each time they come back different. I've just sent off for a saliva cortisol test.

I feel like I'm having a breakdown. Sorry to be dramatic but my body is shutting down on a weekly basis. I started on but B12 but d3 and nutriadvance thyroid gland tablets that contain all relevant vitamins.

Im not suicidal but I can't live like this , I am on a diet of fresh foods etc for gastritis.

I wake up shaking,heart palps,fuzzy head. All of which are debilitating and I can't function at all now. My blood pressure is up and down all day. I only sleep 3h rs a day as anxiety wakes me up.

Never experienced anything like it although I'm prone to a bit of anxiety.My B12 is 297 Ng/L range 180 to 900

Folate 8.5 ug/L range 4 to 20

Ferritin 112 ug/L range 15 to 20.

Vit D optimal 84 nmol/L.

My doctor says it's all anxiety but I'm now losing the will to carry on. I'm running out of money for further testing.

I can't get to a doctor as I'm too weak to get out.

Im banking on my thyroid tests to be back tomorrow and hoping to try T3 if I beg my doctor.

I feel in my heart this is not just anxiety. Maybe it is but I can't go on. It's not just mental it's the physical symptoms too. I'm wandering if my adrenals are exhausted from constant anxiety so that's why I'm doing saliva cortisol test.

I apologise for this post but I'm so scared because I feel worse each week.

I will put my results of thyroid on here hopefully tomorrow.

Has anyone experienced such awful symptoms when the thyroid isn't right?

Maybe I'm just going mad but I need to battle this but it's so hard.

Thankyou for reading.

[SlowDragon Administrator]

nutriadvance thyroid gland tablets

What exactly are these ….anything called thyroid support is highly dubious and likely to contain iodine or kelp and definitely NOT recommended for anyone on levothyroxine

If it’s these …..recommend you stop taking them

nutriadvanced.co.uk/thyro-c...

B12 is definitely very low

Exactly what B12 and vitamin B complex supplements are you currently taking

[HelenR23 in reply to SlowDragon]

I am on B12 oral spray from garden of Life organics. Its methylcobalamin from fruit and vegetables. The nutri advanced is thyro complex. I read Dr durrant-peatfield book and he recommended them. I only take 1 a day not 3 as recommended. I will photo the ingredients. The D3 and K2 are mouth drops from biocare and 6 drops a day under tongue. I take Vit C complex by Hey Nutrition.

Im sorry to keep posting but I really am reaching out . My doctor won't help much he just referred me to mental health nurse. I'm paying privately for counselling but my funds are exhausted as I lost my job because of it. I'm trying my hardest to battle through. I know anxiety can be debilitating but it all started when my gastritis flared up and my thyroid went haywire and It is taking months to get the right thyroid tests done. If it's anxiety I will accept it and fight it but I feel it's more than that because I've never felt anything like this before.

will post pics of vitamins. Thankyou.

[greygoose in reply to HelenR23]

Vit C complex by Hey Nutrition

Do you take your vit C at the same time as your B vits? They should really be taken two hours apart because vit C will stop your body using B12 correctly.

Are you taking magnesium with your vit D? The two work together, so vit D won't do much for you without the magnesium.

[HelenR23 in reply to greygoose]

I space them out the vit c and B. I don't take magnesium but have ordered some so it's best then to take with Vit D. It's so confusing but I'm writing things down now. Many thanks for replying.

[greygoose in reply to HelenR23]

That's best to do, yes, make notes.

Make sure you take the vit D and magnesium four hour away from thyroid hormone.

[HelenR23 in reply to SlowDragon]

I need to stop taking Nutri advanced as it has kelp in!!! Luckily I've only had about 5 so far.

[GlowCoach Administrator]

Definitely I've experienced wild anxiety with the most debilitating physical symptoms. GP just had me down as a basket case really. 😭 This was on Levo alone but also too low a dose of NDT when my vitamin levels were low. I've since managed to turn it around by eliminating gluten, dairy and soy from my diet and finally addressing the low vit levels. GP is astonished and can't understand how that could happen but it was thyroid related issues all along! I'm absolutely not an anxious person under normal circumstances and at the time was very perplexed as to what had gone wrong with me.

It looks to me like you have B vitamin issues. If you're already supplementing B12 then that's a pretty low result you have there.

Your folate is too low, so whatever B12 you have, you won't be able to use properly as they work together. People report feeling well when their folate is around 20. Magnesium is another cofactor for B12 and mine was so low that once in a high dependency unit I was given 2 bags of magnesium just to get my levels even reasonable. I now use a magnesium oil spray regularly. Magnesium flakes in the bath can be heavenly when you're keyed up and anxious. Either that or Epsom Salts. Buy a large bag and enjoy.

It's likely that your FT3 is a bit too low for you also but will be interesting to see when you get Medichecks.

So there's plenty to be done to get you better, and from my own experience I know it's possible. In the mean time be kind to yourself.

[HelenR23 in reply to GlowCoach]

Thankyou for the reassurance will get more B vitamins and magnesium.

This morning I can only get up to go to the toilet. Definately not right. Didn't ever feel this ill. I don't convert T4 to T3 by the sounds of it. I'm not sure why as I was limping along on Levothyroxine for 20 yrs and this happened only after prolonged stress which I normally cope with.

Really appreciate all this help from here.

[GlowCoach Administrator in reply to HelenR23]

I didn't realise myself that low vitamin levels mean less conversion of T4 to T3, also in general your thyroid hormones cannot work properly. It was once said to me that if the body is an orchestra then my body was playing out of tune. Was a great way of putting it and it now makes sense that getting everything optimal will make my body play like the London Symphony Orchestra. 🎼🎶

Probably over the years low vitamin and T3 levels have been stacking up at tissue level and the stress was just the last straw and you had no reserves to fall back on. Doctors set such high store on blood results but they really don't reflect what's happening in the cells and I, and probably you are those people that blood results don't show a true reflection of what's going on deep down.

[HelenR23 in reply to GlowCoach]

I do feel stress was the last straw. I've always eaten well but my vitamins were obviously very low. Which magnesium spray do you use? I'm quite sensitive to tablets due to gastritis so sprays are better for me.

[GlowCoach Administrator in reply to HelenR23]

This is the one I'm using at the moment. About 20 sprays a day. They all seem to be about the same strength so so long as you check strength just go on price.

amazon.co.uk/Organic-Magnes...

[HelenR23 in reply to GlowCoach]

so it's not for the mouth it's to be rubbed on the body???

[GlowCoach Administrator in reply to HelenR23]

That's right. I spray onto my inner thigh or stomach. It's different to the B12 spray you have that goes under the tongue. It also still avoids needing to space it away from taking Levo or T3.

[HelenR23 in reply to GlowCoach]

Brilliant thankyou. I thought you could only put it in the mouth but this sounds easier!

[GlowCoach Administrator in reply to HelenR23]

If you get a large bag or tub of magnesium flakes or Epsom Salts and shove a cupfull or two in your bath you will also absorb that through your skin and it will raise your level.

[deb25426 in reply to HelenR23]

, hi I’m so sorry to read all you’re going through.. I can relate to so much of what you’ve said. I had RAI 20 years ago, I won’t go into all the ins and outs I’ve had. I’m on 125t4. Just lately I’ve been feeling so crap all you’ve said but not as bad! I had to go to A&E at the end of august as I was having a bout of Gastritis but the pain started going into my neck and shoulders, I was worried in case it was heart issues. As it was it was acute gastritis. Now, I was told to take my lanzaprazole 2 daily to help and it did, but, I then read when you’re hypothyroid you can have (I forgot the name) low acid, so what I think the lansaprazole was going was drying me up too much. So I stopped taking it.. I still get a few niggles but not as much. I’ve bought some apple cider vinegar to try as it’s good to help with digestion. But I just thought I’d share what’s happened to me.

[HelenR23 in reply to deb25426]

deb25426 thankyou for replying. Isn't it the worst symptom of everything. Somedays I just don't want to be here but I still battle on because I remember the good days I used to have and hope I can get back to those.

Are you on T4 only or have you added any T3 to it.

From all the advice I'm getting I shall up my vitamins and then post my thyroid results on here as I'm not converting well. I'm looking for a miracle really and pinning hopes on it being thyroid issues rather than pure anxiety.

I had RAI twice as it wasn't successful but I didn't have a clue about any of it in those days. I wish I was more educated on all things thyroid but you trust what doctors tell you to do!

Ive never seen an endocrinologist once in all these years, the doctors just let me get on with it.

I hope you are back to health now and managing your anxiety.

Thankyou.

[deb25426 in reply to HelenR23]

I’m on T4 only, until the nhs stopped it I was on combined 125t4 and 10t3. It was the best I felt. Since I’ve been 60 my body has been crap.

[HelenR23 in reply to deb25426]

oh I'm so sad to hear they stopped T3 especially as it helped you. The NHS are cutting back to the point of disaster now and ruining lives. I know it's not there fault.

I guess you've asked your doctor for T3 . I think it's too expensive to buy privately but people do pay for it which is outrageous.

I lost my job because of anxiety and gastritis so I'm living on a credit card as my partner can't work due to his slipped discs so it's getting dire. But I will max out the card until I get the answers and treatment I need. Like you I'm nearly 60 and my body feels so old and weak. Thought I'd look forward to my 60s but not like this. You take care and I hope by some miracle you can get back in T3.

[deb25426 in reply to HelenR23]

just a thought, have you had any covid boosters?

[HelenR23 in reply to deb25426]

Not yet. I have asthma too so normally have a flu jab but I've put them both off in case I feel worse as I couldn't cope with anything else just now!

Im not out and about either due to anxiety so hopefully I can keep clear of Covid. My partner goes out to shop etc but he takes a mask and washed his hands when he gets home. He had covid even though he had his jabs but I didn't catch it from him. Maybe I shouldn't talk too soon ha ha.!

[deb25426 in reply to HelenR23]

I haven’t had any boosters at all.. in my opinion, it’s the jabs that have done this to me, but that is my opinion xx

[HelenR23 in reply to deb25426]

Yes lots of people have had bad reactions to them. I usually feel flu like for a couple of days after the flu jab but the covid ones were ok. I'm not going to chance it this time so let's hope our immune system works well.

Its odd about gastritis though, someone else on here has got anxiety and gastritis. I know there is a connection but didn't realise how common it was with thyroid issues. Isn't this all so complex.

I wish I'd never had radioactive iodine treatment either as I've never felt on top form for 20 yrs since they did it. I started reading a thyroid book by Dr Durrant-peatfield. Very interesting read and it makes sense what he says.

well let's look forward to brighter days from here onwards.

[deb25426 in reply to HelenR23]

I was allergic to all the meds for hyperthyroidism so I didn’t really have a choice at the time! Xx

[HelenR23 in reply to deb25426]

Oh no that's terrible. You must have struggled for ages trying to find one you weren't allergic too.

The first time I was on Carbimazole I felt amazing for a few weeks. I'm guessing it didn't work enough so that's why I had RAI twice. I wish I felt like that again.

[deb25426 in reply to HelenR23]

it was carbimazole that put me up A&E each day over Christmas 20 years ago

[HelenR23 in reply to deb25426]

I wander what the ingredients were that you were allergic too. That must have been dreadful for you especially at Christmas time. Do you have allergies normally?

I did a test for gluten intolerance 2 weeks ago and it was positive. I've eaten seeded bread for years but never considered it before. I also react badly to insect bites but all these are quite new to me.

Ive got other issues that I'm medicated for, asthma, Menieres disease and occular hypertension in both eyes. I rattle with all these pills.

Maybe I should do a lactose intolerance test but it's another expense. I eat a natural yoghurt every day for gastritis so would hate to give them up. I've switched to skimmed milk too.

I hate getting old. I blame myself for a lot of these things because I'm a smoker. I don't touch alcohol but my smoking is my crutch. I was looking at giving up before this awful anxiety started but I'm not ready for that yet!

[deb25426 in reply to HelenR23]

it was just the whole medication. I havent tested myself for lactose intolerance, i looked at the symptoms and a lot of them matched! So I went for it xxx

[HelenR23 in reply to deb25426]

ok well we tend to know our own bodies by now. It was great chatting today so thankyou take care

[HelenR23 in reply to deb25426]

Sorry another thought. It's odd how gastritis can mess us up. I went to A&E beginning of August too. They pumped me with PPIs and triple therapy antibiotics which made me so ill.

I don't touch PPIs now as I read it interferes with absorption or something. I'm trying a diet and cut out gluten. It's a slow process and I still get pains everyday but I think the anxiety produces acid so that doesn't help. Gastritis alone is debilitating let alone thyroid disorders.

I long for my old life back.

[deb25426 in reply to HelenR23]

I’ve cut out lactose, I think that has helped.

[GlowCoach Administrator in reply to HelenR23]

Experiment with removing gluten, but also dairy and soy. That made a big difference for me. The proteins in them can block the pathways for your B vitamins.

[HelenR23 in reply to GlowCoach]

Oddly enough I did a coeliac test and it was positive so I've cut out gluten now since last week. I never realised I was intolerant but always loved bread etc. I don't eat Soy and check labels but I do eat natural yoghurts for gastritis. May have to find an alternative or just take probiotics via a pill.

[SlowDragon Administrator in reply to HelenR23]

Have you told your GP your coeliac result was positive

You should have endoscopy to confirm diagnosis on NHS

Officially a maximum wait of 6 weeks

[HelenR23 in reply to SlowDragon]

No I haven't as didn't think it was relevant. I had an endoscopy for gastritis 4 weeks ago but still waiting the results. Is it worth mentioning to my doctor. It was a home test so I assume it was legit. It was from Lloyds pharmacy.

[SlowDragon Administrator in reply to HelenR23]

Definitely tell/show GP positive test result

They would/should do NHS coeliac test

Endoscopy should also have looked for damage of coeliac so gastroenterologist who did endoscopy should be told too

[HelenR23 in reply to SlowDragon]

OK I shall do. Many thanks.

[SlowDragon Administrator]

we recommend a good quality vitamin B complex daily for low folate and low B12

one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

Low B12 symptoms 

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

Come back with new post once you get thyroid results

[HelenR23 in reply to SlowDragon]

Thanks, I've just ordered the Thorne vit B . I need to add magnesium too but will get a spray one as my stomach can be sensitive.

[Imaaan in reply to HelenR23]

Im glad you've decided to order the Thorne B basic, it brought my levels up. As for magnesium, have you ever tried magnesium glycinate that states the amount of elemental magnesium ? I've dealt with gastritis for about 7 yrs and I was fine on it. I found splitting my dose to be the most beneficial for my racing heart/palpitations. 200 mg at lunch and 130mg at supper.

[HelenR23 in reply to Imaaan]

Im going to give the oil a try that you rub on your body. If that fails then I shall try glycinate as my stomach is so sensitive. Thankyou for your suggestion.

[Ragerty]

hI Helen

I'm sorry to hear that you are feeling so anxious it's the worst feeling in the world. I don't know if you have tried meditation but I find it does help. It's tough at first but once you get into the habit of doing it it does help. I would suggest you give it a try . Download the app Medito it's free and it teaches you how to meditate. I hope this helps and brings you some peace.

[HelenR23 in reply to Ragerty]

Thankyou Ragerty. I have tried meditation, mindfulness and counselling. I think mine is my levels of thyroid and vitamins as I don't convert T4 to T3 well. Only just discovered that from this group. I appreciate your advice and will try again.

[Ragerty]

Me too it was a counsellor that first suggested that I should have my thyroid tested and sure enough my anti bodies were through the roof. And I was diagnosed with hasimotos. I still don't feel right and continue the battle to get well. The symptoms of anxiety are horrendous and I know exactly what you mean when you say that it's as much as you can manage is to get up and go to loo. I too feel that I haven't reached my optimal levels and am working on it. So when I read your post I really felt for you and wanted to suggest something that helps me while we go through this battle. I do hope that if you try it again it does give you some relief while you work on getting your levels right. Take care

[HelenR23 in reply to Ragerty]

Aah thankyou Ragerty. I realise now I'm not alone in this battle. Other people tell me they have anxiety but they are out and about and coping with it . It's a good job your counsellor suggested checking your thyroid or you would have got seriously ill!!

I've ordered many extra vitamins now so fingers crossed. My new thyroid blood test results arrive this week so that will be interesting to see those.

I keep pinning my hopes on it being thyroid induced anxiety but will have to fight harder if it isn't.

I hope you get some peace soon from it all. Thankyou for replying. This is a lifeline for me posting on here.

[Ragerty in reply to HelenR23]

It must of been fate when I saw the counsellor I was assigned too. His wife is also a counsellor and it was her who was diagnosed with Hasimotos and he was able to see the same symptoms in me. Before his wife was diagnosed he told me she used to sit and rock with anxiety and on visiting her doctor he suggested counselling until she told him she was a counsellor this did and still does make me laugh 😃. I belong to a local thyroid group and I know a lot of the others suffer with anxiety too so you are definatley not alone. Is there a group in your area you can join we meet over zoom and meet up once a month its very supportive talking to others who have thyroid issues.

I did giggle when you said other people say they have anxiety but are out and about and coping with it don't you just hate them for being able to cope. I don't feel anxious all the time but when it hits its horrendous and I used to beat myself up by asking myself why if everyone else is coping why can't I ? Now I tell myself my thyroid is having a party forgot to invite me and it will soon pass.

I've learnt that when this is happening I spoil myself meditate more enjoy a bath talk to myself and say its going to be OK. I also find that if I feel anxious I take a antihistamine called phenergan to help me get a good night's sleep I only take these once in a blue moon but it does mean I sleep and am able to cope better when I've slept. I also make sure I eat because soon as I feel anxious my appetite goes out the window and then I don't get the nutrition we need and it becomes a vicious circle.

I strongly believe that we are on a rollarcoaster of a ride with thyroid issues and we have got to find ways to enjoy the ride. So working on getting our levels optimum for us is the first important step followed by things that make it easier until we get there.

I hope you are feeling better this afternoon and can enjoy the rest of the day. Fingers crossed your extra vitamins make a difference for you. And remember your not alone

[HelenR23 in reply to Ragerty]

Thankyou. You were in the right place at the right time and someone somewhere was looking out for you to have had that counsellor!!

A little bit calmer this afternoon but I feel it rising its ugly head again. I'm lucky to get an hour off a day for good behaviour.

Yes the thyroid is definately not inviting me to its party ha ha.

Hope you improve daily and fingers crossed the vitamins will arrive soon so I can start seeing improvements.

[1tuppence]

HelenR23 I do hope you can feel the support from here? anxiety is awful to deal with....having been on the floor, literally, and too anxious to do much about getting up, I know from my own experience, that life can, and does, get better. May I ask if you are eating? Again, from my own experience, I know I wasn't eating well at all when I was going through the worst period of anxiety. I don't have gastritis, so am not much help in terms of what you can/can't tolerate food-wise, but I did find that regular eating, of as nutritious food as possible, helped me. The advice on vitamin supplements sounds excellent....and as advised here, I've changed my B vit supplement to Thorne Basic B......and in general, along with lifting my ferritin levels, feel better than I did before I changed them. Really wishing you well, and Hope...hope is so important isn't it? Count yourself hugged.

[HelenR23 in reply to 1tuppence]

Thankyou for replying. It's so uplifting to hear people have been down like me but have got better.

I do eat little and often if I can. Somedays I force myself. I've changed my diet completely due to gastritis. A lot of fruit and organic foods. There is so much I can't eat so I've lost weight and the anxiety doesn't help. It burns the calories off me. Last year I would have loved to have lost weight but not like this.

Yes I'm going to try the vitamins and hope I improve. I know it's a long road ahead and with the support from everyone on here I think I can get there.

Thankyou.

[SlowDragon Administrator]

Gluten intolerance/coeliac frequently linked to feeling anxious

Changing to absolutely strictly gluten free diet may really help

Won’t necessarily be an immediate effect.

Can take several months for brain fog to start to slowly improve

ncbi.nlm.nih.gov/pmc/articl...

beyondceliac.org/living-wit...

healthline.com/nutrition/gl...

[HelenR23 in reply to SlowDragon]

Oh ok I will read your links. It's odd because I've eaten bread and gluten all my life but I've had gastritis for years and anxiety but never even connected it . Thankyou.

[SlowDragon Administrator in reply to HelenR23]

I was diagnosed as gluten intolerant age 56 eight years ago (more on my profile) …..zero gut issues….zilch

The most significant improvement was that under lying anxiety just dropped away on gluten free diet

Similarly finding very recent change to dairy free has also been “more relaxing “

[pennyannie]

Hey there :

I see you started reading Dr P's book but please remember that as you are already diagnosed hypothyroidism and taking iodine in the T4 - Levothyroxine - this additional complex would not be appropriate and we need to add individually core strength vitamins and minerals if our blood tests show us to be non optimal.

Did you ask your doctor about trying liquid T4 ?

[HelenR23 in reply to pennyannie]

Morning

My doctor won't issue liquid T4!

I have now stopped the thyroid gland vitamins. Luckily I only took 1 a day for about 4 days.

Ive just had my Medi Checks blood tests back. My iron is ok but Ferritin too high. I am going to post results on here in a moment. It recommended I stop taking iron but I only take B12 in an oral spray.

Thankyou for replying to me.